Spotlight: National Breast Cancer Coalition

The National Breast Cancer Coalition (NBCC) is a nationwide advocacy organization founded in 1991 as a broad-based network of grassroots supporters and member organizations that included both breast cancer groups as well as groups focused on all cancers. Member organizations would maintain their own agendas for support, education, and advocacy. But as a coalition, they share the goals of shaping public policies, fostering empowered and evidence-based decision-making, and engaging administrative agencies, scientists, and health care professionals around a new breast cancer agenda.

With more than 600 member organizations and 60,000 individuals, NBCC is a leader in safeguarding that the diagnosed have the power to influence the medical practices and research agendas that affect them.fran-visco-science-magazine


What we love about NBCC is its evidence-based approach, critical advocacy, and commitment to ensuring that accurate scientific information about breast cancer reaches women, informs policy, and impacts the direction of research.

 


From an evidence-based medicine (EBM) [1] perspective, NBCC evaluates scientific and medical information, develops position papers, and holds programs to educate the public on how to evaluate scientific and medical research. NBCC provides information that debunks myths, explains scientific controversies, and offers formal positions on unresolved biomedical concerns.

The online center for advocacy training shares videos from past summits, conferences, and instructional programs. Here, Dr. Patricia Steeg discusses metastasis research: “What Do We Know, and What Progess Needs To Be Made?”

Breast Cancer Consortium shares more of Patricia Steeg’s perspective on clinical trials in a research brief, “The Right Trials.”

Project LEAD: A Seat At The Research Table

NBCC’s Project LEAD (Leadership, Education and Advocacy Development) Institute is a unique science-based program that teaches laypersons about breast cancer biomedicine. Experts teach participants how to understand breast cancer biology, read research studies, make sense of statistical analyses, make informed decisions, and participate in breast cancer research processes such as evaluating grant proposals for the Department of Defense Breast Cancer Research Program.

The Department of Defense Breast Cancer Research Program (DOD BCRP) was created in 1992 as a result of NBCC’s “$300 Million More” campaign to increase federal funding for breast cancer research. Educated, trained consumer advocates (including those from Project LEAD) participate in a two-tiered process where research proposals are reviewed first for scientific quality, and then for programmatic relevance. Due to its structure, the program can fund innovative, high-risk, high-return research and quickly respond to current scientific advances. Congress approved funding for the program each year since 1993, and it now totals more than $3.1 billion dollars. A highly efficient program, 90 percent of funding appropriations go directly to competitive, peer-reviewed research grants.

Breast Cancer Deadline 2020

nbcc-2020-logoIn 2010, NBCC launched the Breast Cancer Deadline 2020. Though criticized by some as ‘misguided’, the Deadline marked a major change in public discourse about whether the dream of eradicating breast cancer was possible based on existing evidence. The answer, as the NBCC outlined in a White Paper, was an unequivocal no. A new strategy was long overdue if ending the disease were to move into the realm of possibility. Setting 2020 as a ten-year goal was a plea to change how society thinks and talks about breast cancer, to focus research, and to measure success with valid, evidence-based indicators.

While some advocacy groups disagreed with the campaign’s language (since “cure” rhetoric abounds in the breast cancer world), others were willing to suspend disbelief. NBCC had a track record of getting things done and making serious changes in the breast cancer landscape including public policy, patient advocacy, and evidence-based medicine. For example, the coalition advocated for the Accelerating the End of Breast Cancer Act (H.R. 3067), which calls for the development of a federal commission to identify promising areas of research, stimulate strategies for primary prevention (i.e., avoiding breast cancer by eliminating exposures that increase risk, not just detecting the disease after it has started), direct research toward the prevention of metastasis, and coordinate, rather than duplicate, effort.

While it is unlikely that breast cancer will end in five years or this campaign will address the totality of needs in breast cancer research, NBCC’s approach is a call to action that has the potential the make a real difference.

A Multi-Faceted Legislative Agenda

NBCC has a strong record of successful advocacy. In addition to forging the DOD BCRP and its continued funding appropriations, the coalition has been highly instrumental in persuading Congress to introduce bills related to consumer involvement, environmental cancer research, prescription drug coverage, genetic nondiscrimination in insurance, and a Patients’ Bill of Rights. NBCC worked persistently for many years to expand access to health care through the Breast and Cervical Cancer Treatment Act, which secured Medicaid coverage for low-income, uninsured women diagnosed with breast or cervical cancer through a federal program.

Current legislative priorities include: (1) Accelerating the End of Breast Cancer Act; (2) $150 Million for the DOD BCRP for FY 2016; (3) Guaranteed Access to Quality Care for All; (4) Ensuring the Participation of Educated Patient Advocates in all Levels of Health Care Decision Making.

2016 Advocate Leadership Summit

To learn about the science of breast cancer, critical issues in research, and NBCC’s public policy initiatives, attend the 2016 Advocate Leadership Summit in Washington, D.C.

One of the greatest things about this conference is meeting other activists who are willing to engage with the science while working to change the breast cancer paradigm. Hearing directly from researchers and health professionals promotes dialogue and closes the information gap on both sides of the podium. NBCC will once again host a Lobby Day on Capitol Hill, to be sure voices are heard.

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1 Evidence-Based Medicine systematically searches a wide range of international medical journals applying strict criteria for the validity of research. Experts critically appraise the validity of the most clinically relevant articles and summarize them including commentary on their clinical applicability. EBM also publishes articles relevant to the study and practice of evidence-based medicine.

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